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Hello, I Was Diagnosed With Celiac Last Month.

Runner86

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Runner86 Newbie
Runner86
Posted

Hi everyone, last month while in the hospital I was diagnosed with Celiac and Crones. We couldn't figure out what was wrong with me when it started up a week after Christmas. I lost a lot of weight due to the Celiac and I couldn't go out much. Now that I am aware of whats wrong I have been keeping to being gluten, wheat and dairy free. I am glad to know there is a site like this so I can discuss this. So far from what I have seen this site is my Wikipedia for Celiac Disease. Thank you.

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Lisa Mentor
Lisa
Posted

Hi everyone, last month while in the hospital I was diagnosed with Celiac and Crones. We couldn't figure out what was wrong with me when it started up a week after Christmas. I lost a lot of weight due to the Celiac and I couldn't go out much. Now that I am aware of whats wrong I have been keeping to being gluten, wheat and dairy free. I am glad to know there is a site like this so I can discuss this. So far from what I have seen this site is my Wikipedia for Celiac Disease. Thank you.

Welcome Runner! This is a great place to be and we welcome you! Please feel free to walk around this site and and join in and ask any questions you may have. We have all walked in your shoes and here to help. :)

I stayed home for two months, until my gluten free life took hold. B)

We are glad you're here and glad to be helpful!!!!

dmdavis Newbie
dmdavis
Posted

Hi everyone, last month while in the hospital I was diagnosed with Celiac and Crones. We couldn't figure out what was wrong with me when it started up a week after Christmas. I lost a lot of weight due to the Celiac and I couldn't go out much. Now that I am aware of whats wrong I have been keeping to being gluten, wheat and dairy free. I am glad to know there is a site like this so I can discuss this. So far from what I have seen this site is my Wikipedia for Celiac Disease. Thank you.

Hi, I am dmdavis. I was just diagnosed yesterday with Celiac eventhough I had a blood test on March 15 that showed a high count of anti-bodies. My Dr. insisted I have an endoscopy to confirm. I am 67 years old and as I look back at my medical life I realize I have probably had this for most of those 67 years. I have periphal neuropthy, osterporsisi, and a list of things I cannot even remember. I feel healthy and I still manage a 500 unit apartment community. I have taken all of my health issues in stride because when there is no obvious diagnose it becomes a stress related issue or so said all my Dr.'s. I am seeing a Dietician soon to help me through the new eating life I am about to embark on. I have read articles that says long term celiac can be fatal. Please help me find people like me who are older and may have be mis-diagnosed most of their lives.

Thank you!

eatmeat4good Enthusiast
eatmeat4good
Posted

Welcome Dmdavis,

I am glad you finally found out what is wrong. I try to educate everyone I can about Celiac young and old alike. I just try not to be obnoxious about it but I say, Check it out on Celiac.com...and see if you have it too!

Like the commercial Got Milk?

They have a T-shirt Got Celiac?

no kidding. Anyway, welcome to feeling better and getting healthy!

Cattknap Rookie
Cattknap
Posted

Hi Runner - welcome! You should be feeling better soon - the diet changes should eventually make a big difference in the way you feel. I too was recently diagnosed with celiac. It was a nurse practitioner who put my symptoms together and believed I might have celiac - finally I was tested - 2 blood tests and a biopsy and every test was positive.

I am 60 and believe that I, like you, have probably had undiagnosed celiac for a while - at least 12 years or longer. Each day I am finding it easier to cope with the dietary restrictions. I am anemic even after taking large does of iron complex for 2 years and I have recent thyroid issues - I have been on the lowest prescribed thyroid meds dose for years until a few months ago - my meds have been raised 3 times this year alone...all caused ultimately from celiac. I also began having shingles (twice in 8 months). I too consider myself healthy and active so this all has been difficult for me to understand what is going on with my body.

I have only been eating gluten free for a three weeks but it was made a positive difference in the way I feel. I'm surprised at all the choices there are for us gluten free people both at restaurants, on-line and at most grocery stores. Truly it is not that difficult to live with, well at least for me.

Good luck to you - do all that you can to live gluten free and your health and energy should improve.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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